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PATIENTS FORUM
ANNUAL CONFERENCE 2002 - PRESENTATIONS
National Consumer
Council - Frances Harrison
Challenges for
meaningful patient involvement
__________________________________________
Structure of presentation
What is involvement?
What is the consumer experience of involvement?
What do consumers want?
What works well?
Limitations of involvement
What is representation?
What works well?
Useful tools
What is involvement?
’A method of identifying consumer needs
and views in order to develop policy and allow for balanced and
effective decision-making’
Organisations involve consumers in:
investigating unmet or unknown needs
developing policies for dealing with new areas
deciding on priorities for planning and
strategic purposes
assessing the performance of services
Involvement method - consultation
What is the consumer experience of
involvement?
NCC’s Mori research (2001) found:
’It won’t make a difference’ -
decisions are taken behind closed doors
Fatalism - ‘have to put up with
things’
Being made to feel stupid and small,
when they tried to be involved
Organisations consult because
they have to, not because they want to
What do consumers want?
NCC’s Mori research revealed:
Consumers are most concerned about issues which
have a direct, localised and immediate impact
They are more likely to get involved over an
issue which has direct personal impact
They want meaningful involvement
They want to set the agenda
Involvement should be a process not just an
event
Want comprehensive and trustworthy information
What works well?
‘Involving Users. Improving the
delivery of healthcare’ (March, 1999)
Criteria for effective involvement:
An understanding of the starting point
Support for improvement
An understanding of the profile of consumers
Commitment
Blank sheet approach
Flexibility
Feedback
Limitations of involvement
Can’t involve all of the people all of the time,
on all of the issues
People don’t want to be involved all the time on
everything
Involvement can’t be relied on for ongoing and
continuous improvement. It is a method more suited for issue specific
and time limited initiatives
An effective system for consumer input means
complementing involvement with representation
What is representation?
For involvement to be meaningful the results have
to be analysed, contextualised, understood and appropriately conveyed to
policy and decision makers
The consumer interest is one of many competing
interests for policy and decision makers
Representation refers to a process whereby
consumers’ interests are skillfully advocated to policy and decision
makers
What works well?
Representation works well when the
arrangements are:
Independent
Clear
Connected
Expert
Transparent and accountable
Resourced
Useful tools
Stronger Voice
a flexible training programme to equip
people with the skills and focus to become effective consumer
representatives
Speaking Out for Consumers
a good practice guide for organisations
on how to get the best out of consumer representatives
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